About a week before my Diagnosis Day, my niece shared an online women’s retreat she was going to do. I clicked on the link and it seemed like just the thing to do when facing a fatal disease. The tag line of the retreat is “nurture yourself, align with your passion, and take action on your dreams”. In simpler terms that means figure out what’s most important to you and act on it. The social worker at UCSF said it is important for me to figure out what I want most now that I know my years are numbered. Well, they have always been numbered, but the number is now smaller than I had planned. I was always planning to live to 100 years old but that’s not something we get to plan.
One of the retreat sessions included a meditation on a peak experience in my life, when I was most in awe, and really think about what I was feeling at that moment. More on that shortly.
You need a little background to build up to my peak experience. I was pregnant for the first time in 1999. My water broke at 21 weeks and I was put on bed rest, but our daughter Anna was born 2 weeks later. Viability for 23 week preemies was not great in 1999 and we decided “do not resucitate” which was a sad and heart wrenching decision.
I found an online support group for Subsequent Pregnancy After Loss which helped me greatly. And online support was a rather new concept in 1999.
I became pregnant again, with a due date of December 22, 2000. It was determined that I have a short cervix (called incompetent very cervix back then, lovely term) so I had a cerclage which is a purse string stitch to keep the cervix closed. I was put on bedrest again, first at home and then in the hospital. All these interventions got my son Andy about 3 more weeks inside me than his sister had which increased viability greatly. When he was born at one pound thirteen ounces on September 12, a team of specialists took over and whisked him away to the NICU. I needed blood transfusions after the delivery and I did not see my son until 12 hours later. My first thought was that he looked like Anna and he wouldn’t make it. I couldn’t touch him but I blew him a kiss.
Andy remained on the warming tray in the picture for about 2.5 weeks. One morning I went to the hospital to spend time with him. The NICU staff was preparing to transfer him to an isolette. He was still on ventilator. They asked me if I wanted to hold him, since they were moving him anyway. They said this was not something they would normally allow because of the ventilator. This led to my peak moment.
Despite the surrounding people and medical equipment, when I meditated on this moment I didn’t see any of that. It was just me and my baby finally in my arms. What I felt in that moment was love and connection and hope.
According to the retreat leader, these should be my core values. Others may value surfing, or travel, or fun or anything they felt in their peak moment.
It is helpful to have a focus on these values. I am supposed to focus on them for 40 days but I think I will keep going for the rest of my life! Journaling and art are part of the retreat.
For the rest of my life I plan to be open to love, seek connections with family and friends (and learn new ways to keep up connections with people when I lose my speech), and hope, which right now means trying to find a clinical trial that can help me have a longer and better quality life and help future generations not have to deal with this disease. LOVE. CONNECTION. HOPE .